I have had PMR for two years and am now down to 2mgs of Pred which I did gradually. My bloods are right down to 1. I still find it very difficult getting out of bed in the morning and my limbs ache most of the day. I am now having Bowen therapy and am taking 4000mgs of D3 and Magnesium. If my bloods are that low why do I still ache so?
Hi Tricia, the one thing I immediately thought is that maybe you have reduced a little too far. If you are aching most of the day I would go back up to the level of pred you were comfortable with that controls the pain.
I have had a really bad flare and have had to go back up o 20 mg ( very reluctantly) . But I say if you are on pred anyway don't suffer the pain more than you have too.
Best wishes, Sue
Hola Tricia, estoy de acuerdo con Sue, claramente estás en una dosis demasiado baja actualmente y debo preguntarte, ¿continuaste reduciendo incluso cuando volvió el dolor o este dolor apareció de repente? De cualquier manera, estar en 2 mg después de solo 2 años es un poco rápido. Sí, sé que he tenido un brote, lo que retrasó mi recuperación unos meses, pero aun así actualmente estoy en 7 mg y también me acerco a mi segundo aniversario.
Necesitas aumentar tus prednisonas hasta el último nivel de dosis en el que estabas libre de dolor, permanecer allí durante unas buenas 6 semanas y luego reducir lentamente utilizando el método de reducción muy lenta e incluso casi dejar de reducir. Yo uso este método, pero solo reduzco en 0,5 mg.
No todos los pacientes con PMR tienen niveles elevados de VSG/CRP, por lo tanto, el hecho de que los tuyos no muestren niveles elevados no significa que ya no tengas inflamación.
Todos los suplementos que tomamos, y yo también tomo, vitamina D, calcio y magnesio, ayudan con los efectos secundarios de los esteroides, pero ninguno de ellos ayuda a reducir la inflamación causada por la condición autoinmune que actualmente está activa en nosotros. Esta condición probablemente se apague por sí sola con el tiempo, pero mientras tanto, la dosis adecuada de prednisona mantendrá la inflamación bajo control. Saludos, Tina
Hola Tricia,
He tenido PMR durante casi tres años y actualmente estoy tomando 10 mg de Prednisona. Intenté reducir a 8 mg muy lentamente, pero tuve un brote, así que volví a 10 mg. Incluso con 10 mg, todavía tengo algo de dolor, aunque leve y solo en los hombros.
Mi médico me ha sugerido que permanezca en 10 mg durante unos meses más y luego intentar reducir de nuevo.
Cada persona tiene diferentes niveles de dolor con la misma dosis de Prednisona, por lo que es realmente difícil especular qué dosis deberías estar tomando.
Tu cuerpo te indicará qué cantidad de Prednisona necesitas, y por lo que me cuentas, parece que tu dosis de Prednisona necesita ser más alta.
Deseo más que nada estar en una dosis más baja, pero hay demasiado dolor. La realidad me dice que, desafortunadamente, necesito permanecer en una dosis más alta. Seguí el plan de reducción que sugirió Eileen y no funcionó para mí, así que por ahora mantengo la situación actual. Lo intentaré de nuevo en algún momento.
Saludos,
Shawn
Because the bloods don't always reflect the activity of the autoimmune part of PMR and it is the symptoms that should always be king, not the blood markers which are only ever a guide. Have you tried taking a slightly higher dose? Where did you last feel well?
You cannot reduce relentlessly to zero - even using my very slow reduction plan. It will get you to the end point you are searching for: the lowest dose that gives the same result as the starting dose. That is where you can rest a while - but you keep trying a small reduction every so often to see if the autoimmune disorder has waned at all. It probably isn't steady in its activity, waxing and waning a bit. At its low point you may get to a lower dose but then find you need more at another time.
If you can get rid of the pain with a slightly higher dose then that is the answer, you are simply at too low a dose - but if pred won't sort it then it is possible there is another cause and your doctor should do some other tests, such as thyroid function or vit D to see if that is low despite your supplement level.
Eileen, I'm in a similar dilema. I've been at 12 mg for a little more than a month and have signifigant stiffness. However, I've been keeping a daily log of my symptoms for over a year and it's very revealing. The nature of the aches and pains I'm currently experiencing have haunted me throughout my 18 month journey reducing from an original dose of 40 mg. However, the stiffness and pain has never lasted this long.
If I wanted to test out whether my current dose is sufficient by upping the predisone, what level of increase would I try? 3 mg? 5mg?
If I did up the dose to 15 mg or higher and saw some relief, what is the recommended schedule of reduction back down to 12? I'm very sensitive to drops and have only been reducing by .5 mg every 3 to 6 weeks since reaching 18 mg. Would I have to take another 6 months to get back down from 15 to 12 mg.
Hola Jean, dejaré que Eileen responda a tu consulta, pero solo para decir que siempre permanezco en cada dosis durante 4-6 semanas, generalmente siempre 6 semanas, luego hay 2-3 semanas en el método de reducción lenta y casi detenida, y solo reduzco en 0.5, no en 1 mg entero. Buena suerte, Tina
If you are that sensitive, maybe. It is impossible to say. Has the pain and stiffness gone away with previous reductions? If so, it suggests you are about at the right dose for you at present.
Were you diagnosed with GCA or with PMR? When do you take your pred?
You and I have dialogued many times. Although the diagnosis was PMR, my initial symptoms and overall history indicate that GCA was likely present. No need to get into all that again. It's something I'm very confident about. I haven't tried to convince any local practitioners of this conclusion as I expect it would not be welcomed or accepted. Dealing with locum practitioners in the Northwest Territorries, the only priority is to get off prednisone ASAP.
The pain and stiffness is really variable with each reduction, but always there to some extent. As long as the degree of pain or location of pain doesn't increase/change at a level, I take another .5 step down.
I also have pains that I know aren't PMR, which have been dealt with by Bowen. They tend to creep back if I don't do the exercises given to be by the Bowen therapist. My bad. Sometimes I'm afraid to do them when pain(s) are increasing.
Interesting enough, my post this morning may have been a bit cathartic. I'm feeling much better today. I've been avoiding my 2X weekly aquatic exercise class for the past 2 weeks not wanting to make matters worse. I felt like I'd been hit by a truck last night, but today the aches and stiffness have lessened.
I began taking my prednisone around 2 am with a bit of plain yogurt several months back. I usually wake at that time anyway to go to the loo.
Don't we all love the mysteries of PMR and prednisone reduction.
I guess I'll stay the course for now.
Thought it was you but I couldn't remember the last details - my bad!
I think it does tend to take longer for any steroid withdrawal to fade as you get lower - by definition it's a bigger percentage drop. Are you using the "Dead slow and nearly stop" approach or just every day one dose to every day the new dose straight off?
DSNS, usually beginning at 4 days old dose.
Perhaps try from more days old dose and see if that helps? I feel quite disgusting for the first 3 days of new dose and now I'm down low I repeat some of the stages too. Not that it does much good - get totally stuck at alternate days 4 and 3. Accepting 5mg for at least 6 month I think and giving up the unequal struggle for a bit. As approved by my GP.
I'll give it a try Eileen. I guess it's particularly frustrating because I'm at 12 mg. A slower approach would be much easier to accept if I was at least 10 mg or less. This time last year I was at 18 mg. I know slow is best, but it's hard to accept that I've only reduced by 6 mg in 12 months, and still suffer all this pain and stiffness at times, allbeit moderate symptoms in the grand scheme of things.
Thanks for listening and good luck with your continuing journey. It's so great to have you to "talk" to on these down days.
In some people pred doesn't work as efficiently as in others - it may be you are one and that would mean that your 12mg is only doing what 9mg achieve for someone else. That's why we keep emphasising that everyone is different - unfortunately some doctors don't realise it either.
Very interesting Eileen. You may have hit the nail on the head.
I came to another realization yesterday....In one of my replies I said I was feeling better. It didn't last. However, I realized my condition has been deteriorating as the day progresses. By the time I crave my bed, my arms are so sore it hurts to push myself up from my armchair. When I wake at 2 am and get out of bed to take the prednisone my arms are worse and my whole body feels like I have a really bad flu. I struggle to get out of bed. When I get up at 5 am I'm still a bit flu sore, but it improves in a couple of hours. I fell good until about mid-afternoon when things start to go sour.
It may be that the effect of the prednisone is wearing off quicker than it used to. Is that a possibilitiy?
I thought I'd try a bit of an experiment for a couple of days and take tylenol on a regular basis to see if it helps. From personal experience I know that tylenol has helped with non PMR pain in the past. If it doesn't help I might try splitting the 12 mg, taking 7mg at 2 am and 5mg at 6 or 7 am.
Thank you Eileen and everyone who has offered advice. I really did believe that as my bloods were low my PMR was on the way out. My doc said to reduce and I followed your plan Eileen But at 2mgs I felt awful and depressed. Yesterday I took 5mgs and I feel a little better so shall continue with this dosage. Once again thank you everyone for your kind help. I feel better already. I'm not sure these docs appreciate the problem.
Tricia.
I'm pretty sure most of them don't. On one of the forums a former GP who now has PMR said her perception has changed dramatically - before she was desperate to get patients to a low dose asap, now she was asking whether one or two mg here or there really matters in the great scheme of things.
I think that sound liek a plan. Though I'd rather 1mg more pred than use tylenol/paracetamol.
Hola Jean,
Soy muy parecido a ti, muy sensible a las disminuciones de prednisona. Me volvieron a subir a 15 mg de prednisona el pasado diciembre, y ahora solo estoy en 11 mg. La razón por la que te escribo es para decirte que tengo que dividir mi dosis y así me funciona mejor… Tengo que bajar muy lentamente… pero me recuerdo del cuento de la tortuga y la liebre.
Tengo que admitir, sin embargo, que con la temida Navidad acercándose (solo por el esfuerzo que implica), me estoy cansando por las compras… Sé que la gente amablemente me dirá que lo haga en línea… pero no tengo mucha suerte con eso.
Buena suerte, al final todos llegaremos allí… 
I have an even better solution - I don't do any! My brother decided many year ago he didn't want to do even kids Christmas presents because of cost (we lived abroad at the time) and we already didn't do presents for my husband's family (his brother was most peculiar  .
When PMR struck I simply couldn't do it - shopping of any sort was daunting and thinking out of the question. Our daughters get money transferred to their bank account for the entire family and we say we want them to get something the whole family will enjoy or benefit from. It means they won't get things they don't need - and will have to throw away other things to accommodate them anyway since they have small flats with no storage except in the roof.
It was all very different when we were children - Christmas and presents were a highlight in a rather dull world and even a small bit of glitter was massive. Today we eat and buy far too much all year so it has become a feast that requires enormous quantities to make it stand out - and retail encourages us to spend, spend, spend. Then what do we do in January? We throw it all out and diet...